Monday, 30 September 2013

What Will You Say Then

Once again I find myself dealing with people who have opinions on my condition without having to live through it, well meaning people who offer me advice and guidance on what to think and how to feel, as if I was unable to make those decisions for myself. This blog entry is a reminder; it is my body that is dying, not my brain. While this disease saps the energy from me, energy that is slow to recover, somewhere inside me the semi-rational, mostly intelligent person is still alive and still functioning.

Some say that I shouldn't blame "God" for my illness. Some say I am blaming "the world". Some say I should just recognize that this is a random event that means nothing and says nothing. What none of them get to feel is what it is like to sit in a room and have a doctor say that you have 36 months to live, that you have an illness with no treatment and no cure, that you will slowly waste away and die, that you will lose all of yourself along the way except for your mind. I, and other PALS, get this. We get that our body will die leaving an active and vibrant mind inside a dead husk, a shell unable to perform even the simplest task.

Some of you will feel this is directed at you, like I am pointing out something you did. It should be some comfort to you that a great many people will feel that way. You are not the only person engaged in this; it happens all the time. People feel they must say something, especially when I am going through difficulties. In truth there is nothing to say. In truth, the best thing anyone can do for a person with ALS is listen to them, and help them when they need it.

By the way, most ALS patients, not just me, are not good at asking for help. It is not because we are proud; it is because we forget our lost abilities. Our turn to limitation is, in most cases, swift enough that we can easily recall when we could grab that cup or make that dinner or walk that path. Most of us have only recently lost our ability, only recently come to limitation. Our psyche has not caught up.

If you want to be truly helpful to me, listen and seek to understand. If you want to be truly helpful to me, look at where I am and anticipate where I might be going, how I might be feeling, what I might be losing. Today I discovered that cutting my toe nails on my left foot is becoming almost impossible; it soon will be impossible. You say "Call home care; you knew this would happen." I say "Shit, I just did that last week. What the hell happened?" Then I keep trying, keep working to maintain what dignity I have remaining. One day I won't be able to wipe my own ass. What will you say then?

Sunday, 29 September 2013

It's My Decision

One of the things that really sucks about having ALS, or any other disease for that matter, is that it does not exempt you from the other stuff in life, the things that make every day life complicated and tiring. If you are lucky, you are well enough to do most things for yourself. If you are declining, you need help but still there are things to be done. And if you are fully dependent, then there is the emotional stuff in life that you will have to deal with. If you are in care, well, that is different. Once you are that far gone, none of this stuff really matters all that much.

The emotional side of life is as complicated and challenging as the physical side. The emotional stuff you have to do is as challenging as moving furniture, preparing meals, doing laundry, banking or any of those everyday tasks. In fact sometimes the emotional stuff is harder than everything, yet no matter how much you lose your body, with ALS there is always emotional stuff.

I have a friend who says "Life may not be fair, but it's good." I don't agree with her. Some days life isn't even all that good. Life is hard, challenging, difficult, and ultimately you die. What on earth is good about that? Life is just life, sometimes good, sometimes bad, always life. As human animals we have this desire for life. It has nothing to do with gods or souls or spirits. It is simply a part of the ecosystem in which we live, where life is omnipresent and insistent. We do not chose life; it choses us.

Perhaps the only real choice we have is death. We can choose when to die. In spite of what religions and those who believe themselves to be spiritually superior tell us, this is not sinful. It may be weak in some cases, but not in all. What about the soldier who throws himself on a grenade to save a child? Is he or she weak? What about the terminally ill patient, kept alive by machines? Were he or she to refuse medical treatment, is that suicide? Is that cowardice? I think not.

The media is filled these days with stories of assisted suicide; it is a timely subject for me. Someday I will have to be brave enough to say that I am done, unless nature takes its course with me first. With ALS there are assistive technologies to keep me going for a long time, yet one day I will be done. Why is it wrong for me to make the only real decision I get to make in my life? Who is any of us to judge another for this fateful and terrible decision?

Saturday, 28 September 2013

Rat Poison

It takes an awful lot of courage and strength to live with this disease; it doesn't take much to die from it, it is living with ALS that takes so much. I remind myself of this on a regular basis although I really don't see myself as all that courageous or strong. All I do is get up each day and face the morning, go through the challenges of the day, and go to sleep each night. It sound rather like everyone else in this life, doing the things that must be done to keep body and soul together.

One of the slogans for my life is "Weebles wobble, but they don't fall down." The last few days have been a bit wobbly. They have tested my capacity to deal with difficulty. This blood clot in my leg means changes for me; not good changes or bad changes, just changes. In fact my life is filled with constant change, rather like everyone else in this life.

My daily regimen will be complicated for a while. First, I will be getting my blood tested every other morning for the next few weeks or months. That means being near the blood test lab; fortunately there is one across the street from my apartment so I don''t have to go into the hospital as was first thought. Then, for the next week at least, I have to have a shot of heparin each day within an hour of 3:00 PM. I detest needles and the idea of injecting myself so I have decided to take the easy way out and have a Home Care Worker come in each day to do the injection for me.

These injections are an anti-coagulant; they improve the ability of my body to break down clots in my blood vessels. The drug works very well, especially where it is injected into my belly. Already I have to ugly purple bruises on my belly, one on either side of my belly button, rather like medals of war demonstrating my courage under fire, except perhaps a bit low down from my chest. The current plan is for eight heparin shots to raise my INR, the International Normalized Ratio, a laboratory test measure of blood coagulation based on how long a clot takes to form in my blood. Normal is "1"; my target is somewhere between "2" and "3".

The Heparin will be replaced by Warfarin over the next week or so. Warfarin is an effective and well known rat poison, working in large doses to cause the poor targets to bleed to death. It stops coagulation. In the small doses given to blood clot patients, it helps the body by raising the INR and improving the body's ability to break down clots. It also promotes bruising and bleeding. Given this, I have to watch for any unusual bleeding or bruising, lightheadedness, or blood in my stool or urine. Oh joy, oh joy.

The long and short of all this taking and testing and testing and taking is that I have decided to cancel my road trip to Key West in February. Until and unless we can get this clotting problem under control, I need to be close to medical care, just in case. It's a good thing I did my road trip this summer, when I could.

Friday, 27 September 2013

Blood Clots

I have come to see ALS as a beast, a dark malevolent creature, psychopathic, murderous, cruel, waiting in the dark shadows of life, waiting for the opportunity to leap out and steal or destroy anything and everything that is good and happy in my life. It seems to have a power, a life of its own, outside of my body, outside of my spirit, maliciously stalking and attacking, a blackened sky constantly seeking the sunshine in my life and blotting it out.

Wednesday was a good day. On Wednesday the neurologist talked about stabilization, strength, and longevity. On Wednesday the psychologist talked about my enthusiasm for living and how well I was doing emotionally. On Wednesday the respirologist talked about good air capacity and clear lungs, and oh, by the way, I should have an ultrasound on my legs to make sure the swelling in my feet was not related to a blood clot.

So yesterday, Thursday, I went to the Diagnostics Imaging Clinic for an ultrasound. A pretty, young Ultrasound Technician asked me to take my pants off and get on a bed. I complied. She then shoved this device into my groin with such strength that I thought she wanted to sever my leg at the hip. In the process the ultrasound scan identified a blood clot in my left femoral vein, one that was serious enough to need immediate treatment. She said that the vein in my left leg was abnormally narrow, most likely not related to the ALS but simply a lifelong condition, non-threatening on its own but seriously problematic in my current situation. She sent me off to Emergency.

Apparently what one department in a hospital deems an emergency is not what another department deems an emergency. I and my companion waited for more than two hours, watching others come and go from the "Fast Track" line while we simply sat. It seems that a deep vein thrombosis (DVT), another term for this type of blood clot, is not a "Fast Track" event; it's a "you wait for until we get a real doctor for you" event. We sat and she, sadly and unfortunately, got to see me go through every emotion you can imagine as we waited and wondered about this frightening new complication; she got to see what the hard part of my life might look like and where it might lead; she got a look at tomorrow, the real possibility for pain and loss. It is not just a physical disease, it is an emotional and spiritual killer.

Eventually we got into see the "real" ER doctor. There was an extensive interview during which they warned me of pulmonary embolism, stroke, or heart attack, all possibilities should this clot break off and go awandering through my circulatory system. Urgent treatment was required. That treatment is a rather intense drug process involving Heparin to begin with and then Warfarin on a steady basis, with daily monitoring at a nearby hospital, the very one where I was first diagnosed with ALS.

Additional drugs are required to treat this clot, drugs and treatments that would not, in and of themselves, seem overly onerous. However the drugs to reduce the blood clots interact badly with the pain killers for my shoulder; so I now not only get to live a more limited life for the next few months, I get to do it in constant pain.

All of this arises from one simple cause. I spend too much time sitting. I spend too much time in my chair, thanks to ALS. It stole my legs and it is giving me blood clots as a reward. If it cannot find one way to kill me, it looks for another way. If it cannot destroy my soul and spirit by stealing my muscles, it looks for another way. If it cannot ruin my life and seize all joy and laughter by clouding my future, it looks for another way. I hate this disease.

Thursday, 26 September 2013

Highly Paid Technicians

Someone asked me yesterday why I didn't say anything about my shoulder in my blog. Well the truth is that there is almost nothing to say. There is still intermittent pain. There is still no certainty about what is causing that pain. The pain is still, slowly, inexorably retreating. In fact the other night I forgot to take my pain killer pill and I was fine until about 6:00 AM. I slept, or mostly slept, through the night and while the pain was there it was not enough to wake me up.

The bone scan did discover some potential causes. It would appear that I have some minor post-traumatic damage to the shoulder joint and to one of my ribs. The trauma is most likely when I fell while having the heart attack on board ship. The timing is certainly right. I have the heart attack; I fall; I get shoulder pain shortly thereafter.

In addition there would appear to be some small tears in the muscle tissue within my upper arm. These small injuries to the muscle would seem to be adding to the pain. On top of that, it is possible I have some nerve damage as well, given the way the pain is attacking me. So all in all, there are at least three possible causes, likely working together, to cause this pain in my shoulder.

When I asked the neurologist what I could do, he uttered the most dreaded of statements for those of us in pain. He said "Not much. We can give you pain killers and wait until it heals." That seems to be the way it is for this kind of injury. It gives me a tremendous understanding of those who suffer from back pain. There is nothing to be done but wait it out.

There are a couple of lessons in my life that are reinforced by this experience. The first lesson, delivered to me by a very wise man, is that you should never underestimate the possibility that a problem might have two or three causes, not just one. The second lesson is something my GP said to me many years ago. He said "Doctors don't really cure much; we just treat symptoms and wait for the body to cure itself. Really, we are just really high paid technicians."

Wednesday, 25 September 2013

A Good News Day

This entry is late today; I was at the ALS clinic all morning. On ALS Clinic days I face the choice of getting up extra early to make sure I can write, or leaving my blog until after the clinic. Today was no exception and I chose to write this after the clinic visit. This way I can share the results in my blog, with a simple update. Except nothing is simple with ALS. Most of these visits are about how much I have declined and what losses I have faced or will be soon facing. Today was different; today was a good news day.

First, my condition seems to be stable at the moment. These periods of stabilization with ALS are very common. Sometimes they last for only a short while, sometimes they last months and even years. In my case, with lower limb onset and slow progression, there is every reason to believe that my condition will remain relatively stable for many months. On the other hand, it is always possible for this damnable disease to change its mind and ramp up with very short notice. So once again, as always, I am compelled to live day to day. Perhaps that is a good thing.

Second, my lung capacity is stable. I have been doing Lung Volume Recruitment with a breathing bag and it appears to be helping my lungs sustain. In addition the doctor found no evidence of moisture collecting in my lungs, also most likely due to the LVR which helps me cough out any phlegm. So all in all, I can breathe easy for a while.

On the downside, the swelling in my feet is becoming problematic. They are concerned that I am developing blood clots, with the attendant risk that those clots might break free and travel up to my heart or lungs, not a good thing. So I am now scheduled for an ultrasound tomorrow at 11:30 AM, where they will rub goo on my feet and pulsate it with sound waves to see what's happening in there.

So I guess you could say it was a very good news day. Slowed progression is always good news. Strong breathing is always good news. While there no way of reversing what has happened to my legs and diaphragm, at least for the moment things are not getting worse. For ALS, that is as good as it gets.

Tuesday, 24 September 2013

A New Cushion

There is a grey blanket stretched across the sky. A chill is in the air. It's time for long sleeved shirts and sweaters. I can feel it as I walk, or rather, wheel from the truck to my appointed destination. I can see it in the leaves on the trees. The days start late and are moving to later. The nights come earlier with each passing day. Autumn has arrived in Alberta.

There is no reason for this observation; it is simply an observation. My life continues on as it does, as it has, and as it will, regardless of season. The regular stuff happens in the regular way. This week I will do my regular things using my regular methods. Yet there is excitement in my life. There are changes, regularly. My brother is moving back to BC on the weekend. This will be a big change. I will be fine; I have plenty of friends in Calgary and an excellent support network. Ricky is still here. Life continues.

I got a new wheelchair cushion yesterday. The cushion is a RoHo Dry Floatation Wheelchair Cushion; a specialized cushion designed with flexibility and comfort in mind. The cushion has a series of vertical air chambers, each of which is connected to a central airflow valve system. The cushion can be inflated and adjusted to specifically fit each user.

Big deal, you might think. Well these wheelchair cushions cost $661.48 each. It is a big deal. As I have mentioned in the past, ALS is an expensive disease and this is a great example of that expense. Fortunately for me the Alberta Health System covers 75% of the cost of this cushion, so my portion is a mere $165.37.

You might wonder about the cost, thinking how can it be so expensive. First, there is the simple fact of limited run; it costs a lot more when you manufacture a lot less. That drives up price. Second, I sit in this cushion for hours on end; this cushion must be strong and yet flexible, comfortable and yet durable. Third, I take this cushion on and off my wheelchair each time I get into and out of my truck. This means it gets handled a lot, and tossed about a lot. This further increases the demand for strength and durability.

ALS continues to be expensive. On the other hand, look at what I am saving in shoes. After all, I don't walk anymore.

Monday, 23 September 2013


I did something different this morning, something rare and unusual and wonderful, something decadent and debauched. I lay in bed, doing nothing, simply lazing about, listening to the whish and whine of cars going by my window, watching the sunlight shift its way across the blind that half-covers my window, sliding in and out of restful doze, wasting away my morning. This is a rare event for me, something almost impossible given my nature, a chocolate sundae with whipped cream kind of thing.

It was only through another person that I found the courage to do something so indolent, laying about, torpid and slothful. A friend of mine came over last night. She came by for dinner with my brothers, Peter and Jim, and me. She spent the better part of the evening listening to my brothers tell stories of our checkered past, embroidered and enhanced over the span of years. She tolerated the pointed questions thrown at her from my sibling inquisitors, curious to know more about who this person was and why I would invite her into our dinner.

After my brothers left, she and I spent some time talking. We shared our stories, compared our hurts and injuries from failed marriages and lost loves, set in juxtapose our challenges with changing bodies and changing lives. We looked at pictures, hers and mine, from our past, from who we used to be. I made some comment about "when I was normal". Her hand fair flew up, a barricade to further words, a complete block to me. She said "You ARE normal. You are a normal person. You just happen to have some extraordinary challenges in your life, but you are normal."

I was struck by that view, for it has been some time since I considered myself normal, a regular person. I have been living in the shadow of ALS for long enough now, struggling with my losses and changes, fighting obstructions to my mobility and limits to my lift. I have begun to forget normal. Yet she forcefully and fully reminded me that normal is simply where I am now. I am normal.

Then an amazing thing happened. She looked at my feet, those poor swollen red lumps at the end my my dying legs. She undid my shoes and gently rolled my socks down and off. She took some skin cream that I had on the table and she rubbed my feet, working the cream into the cracks of stretched and hardened skin, broken from the swelling. She pushed the circulation, taking the purple to white, making the rough surface smooth with the glisten of moisturizer and vitamin E.

This was a most amazing act of kindness to me, an act that left me so completely vulnerable, effused with a gentle gratitude that is impossible to describe. I went to sleep feeling more cared for than in the longest time. I slept, so well that morning came and drove onward to lunch while I, in restful repose, came and went from wakefulness. In light and gentle slumber, the sun shining through my window, as I lay in bed, I thought about last night. I have not been so calm, so collected, in a long time. All from a simple act of kindness.

Sunday, 22 September 2013


The sun is shining clear and blue, wisps of cirrus are sneaking their way across the open azure, the air is crisp with the promise of autumn, the wind is calm and easy. It is one of those amazing days we get here in Calgary, one of those wonderful, fresh, energizing days that comes on more than a regular basis, the kind of day where anything can happen, where all is possibility, where each and every moment is a treasure. I love these kinds of days.

Of course this upbeat mood is not the weather alone. I awoke this morning and there was no pain; I couldn't understand what was happening to me. I awoke this morning and there was no fear, no worry, no stress. I slept well, soundly and late. I am rested, feeling positive and alive, just the opposite of yesterday morning. While the pain is creeping back into me, the start of the day sets the tone and I plan on keeping that tone.

Yesterday, Peter and Jim, two of my brothers, shared their ideas with me on where I might live and how I might adapt to the changes in my body. We talked about wheelchair access needs, assisted living, care homes, buying, renting, modifying and a myriad of options that might be open to me. We talked about money, how much I have and how I need to make it work. We talked about how long I might live and what might happen if I run out of capital. We talked about life.

I've ended up with a plan. First of all, I am in no rush. I can stay here for a while yet, assuming my landlord does not demand another year lease. Even if he does, he is required to give me 90 days notice, so I have a few months yet. One of my options is to buy my current apartment and renovate it to make it wheelchair accessible. That would likely take about $25,000 down payment and $15,000 for renovations although Jim says he can do most of the work. Peter, in a wise observation said that if I am going to buy, I should look around at other apartments; I might find one a bit more expensive but with the adaptations made already.

The discussion of capital was a big part of this conversation. Since I am no longer working, I need my capital to live on. Once it wears out my pensions will provide basic support but will certainly not provide me with the kind of lifestyle I am used to; I will need help financially at that point or I will have to give up my home and move into care. However by then I will probably be leading a somewhat reduced lifestyle anyways; it may not matter and that's a few years away.

We talked about renting. In many ways this is less attractive to me than buying. When renting, a landlord can do all kinds of things and not all landlords are as good as mine. In addition there are not a lot of adapted apartments for rent here in Calgary; most of them are much smaller and more expensive than mine. Adapting a rented place myself will be costly and still leaves me renting. So while renting is definitely on the table, it might be tougher to find a place.

I am going to reach out to ALS Alberta and Accessible Housing  Society of Calgary to see what they can do. I am going to contact a Realtor to see what is available for purchase. These are my two paths. Both of them work. I have options. I am alive and in charge of my future. I have direction and forward motion.

Maybe that's why I feel so good this morning.

Saturday, 21 September 2013

A Hard Day

I am struggling this morning, dealing with sadness, depression and pain. It's not particularly surprising that these things all conspire against my well-being. Awakening in pain makes me realize how damaged my poor body has become, how much of my strength and recuperative powers I have lost. Wincing as I make my early movements, the painful slide into my wheelchair deepens the darkness begun in me by the pain. Then I realize how hopeless all of this is; my sadness is complete.

There are other things that combine with my morning's trial and toil, other things that weigh on me. Today my brothers and I will discuss where I should live and how I should manage my limited capital. Today we are talking about more changes, more that I must give up, more limits to my life. This is heavy emotional work; the hardest thing for any of us to do is to face our grim realities, to deal with our harsh limitations. I have begun this process already, putting some thoughts and possibilities in place, yet there is more to do and do it I must.

The loss of my youthful strength and vigour is another burden I must bear. The word "old" is starting to show up more and more in conversations with friends and family. I am old before my time and not the good kind of old. Words like venerable, experienced, mature or seasoned are not in my lingua franca; more like grizzled, debilitated, decrepit, and infirm. My life was supposed to be a graceful transition through the decades, easing my way from young to middle to older to old. This disease has accelerated that progression, leaping out of middle, past older and directly to old, to exhausted. I did not pass "Go"; I did not get $200; I went directly to jail, the prison of my chair.

The loss of my life is so little when compared with the losses along the way. The steady drip and grind of ALS, stealing from me mercilessly, wears at my very soul. It pushes away hope, clouding my horizon near and far with black. Each morning I awaken to wonder what will be taken from me today, what insult to ego and person will become the next thing. What will I lose today?

I am tired. I want to go back to bed, to cry, the tears bursting from eyes, explosive saline droplets wrought from the emotions I bear. I want to give up, to stop, to no longer be faced with hard decisions thrown from an even harder reality. I want to live; I want to love; I want to laugh. That is going to be hard today.

Friday, 20 September 2013

Being Active

There is a rhythm to my life, a consistent pattern here at home where I have a routine. Monday is laundry day. Tuesday evening is Trivia. Thursday evening is Name That Tune. Saturday is generally a social, group event of some kind although some days it is an evening event. Every few weeks I hit the road, go for a drive, perhaps for the weekend or just for a day. These regular activities bring me in touch with my friends; they keep me active and alive, out and about. These activities are anchors for me, framing all the other things that go on in my life.

It may not seem like much; some of these things are over in a couple of hours. They certainly cannot take up a whole day except for the road trips. Yet knowing they are coming gives me a focus, something to look forward to, a point of anticipation. The doctors talk about reasons to live when discussing end of life decisions. My social life is one of my reasons to live, one of the things that keeps me going.

It is kind of a good thing that these activities are by and large short in nature. It means I can get some rest, much needed rest, on a regular basis. It means that when I go out, I have had enough recuperation to put my energy and enthusiasm into living instead of dying; laughing, singing, shouting, and even my silly attempts at dancing in my wheelchair. I want to expend my energy on having fun, not on worrying about what might happen at some vague point in the future.

It's not "party, party, party" so much as it is being sure there are lively activities in my daily life, something to "do" when I have nothing in particular that I am supposed to do. Nor does this mean my life is always "go, go, go"; it means I have busy times and quiet times, times when I get out and times when I stay in. In this routine, my life is something like the lives of others around me.

Most of all, I don't want to be that guy sitting in his apartment waiting to die. If I must go, it will not be through indolence. While I march down this road, I plan making my life a brass band, a pipe band, a drum corp. There are not a lot of activities in my life; I just plan on making the most of the ones I have.

Thursday, 19 September 2013

Normal Life

Every once in a while I get a day where life seems almost normal, almost like things have not changed, life where there is nothing unusual or strange. Of course that feeling ends quickly when I look at my wheelchair or have to go to the bathroom, something that happens every morning. Yet past that, past the limitations and losses, past the chair and jug, past the weakness, past all that would hold my life slightly out of my grasp, there lies something approximating normal.

Today is one of those days, those almost normal days, those days where the structure of my life is turned upside down, away from the face of ALS and into the direction of what looks like life for those without this additional gift to their existence. Today is one of those days where I am not defined by my wheelchair and my urine bottle, where my schedule and plan is not set by the morning struggle and effort.

This morning I am not even in my own apartment. I am at a friend's place, writing this late in the morning, well past my usual time, and not even on my own computer. The view from this window, so different than the view from mine, looks out over the vast Alberta southern prairie, up into the foothills with the snow-capped Rockies creating a sawtoothed horizon in the distance. The sky is an impossible blue drifting to an invisible white over the edged blade, the early day haze starting, its opacity blunting the granite teeth.

This morning has been easy. I did not struggle to make coffee in my own kitchen this morning; coffee was made for me as was toast and jam. In other words, like normal people, my day started by getting up and getting out, living outside my contained world. It's like this when I visit with Mom and Ray in Vancouver; they make my morning toast and coffee and shelter me in the kind comfort of their nurturing company. Yet there I see my struggle reflected in my Mother's face; here there is no reflection, just acceptance and the assumption that I am just like everyone else, well almost like everyone else. They have their limitations, I have mine. Normal.

It's the acts of humanity, of quiet generosity, of compassion; these acts are the small steps that make for a nearly normal life, when I don't feel like I am limited or bounded by my disease. To be kind to me is to treat me normally, to visit with me without fuss or flurry, to see what I am and am not, responding with those things that strip away the limiting boundaries of my life. To steal a line, normal is as normal does. For me, the small things, the simple things, the light touch of care; these make life normal.

Wednesday, 18 September 2013

Umbrella Weather

The rain is falling outside my window, the first proof of fall in its chill, dampness; the kind of dampness and chill that pushes inwards, both in your body and your spirit. I can see the drips fall from my tree, hear the puddles squish and splash as the cars drive by on the moisture glistened blacktop. The leaves have leapt from green to gold almost overnight, still clinging desperately, seeming to hope that the impending doom of winter might miss them, not knowing that they are dead already.

Yet even on these dreary branches, some near barren already, lie the seeds of another spring, another year waiting, preparing itself to bring colour once again. There is an eternity to life yet a terminality to it. The emotion of this weather seeps in just as much as the damp coolness. I sit here and think about the coming winter, the cold bleakness, the harsh days. I think about tomorrow.

Sports analogies and stories are unique in their way to help understand. The game is at hand yet we are in the eighth inning. My life has had its three minute warning and I am praying for that Hail Mary pass. I am in the penalty box of life. You pick it; some sport or another has a way of expressing the emotions of my life. They offer the unique combination of a metaphor for life and a parable for living.

Babe Ruth, that great American baseball player, filled the quotations columns for many years with his witty and heartfelt expressions, capturing both the essence of his beloved game and the spirit of the player. He is the one who said; “You just can't beat the person who never gives up.” He is the one who said; “Every strike brings me closer to the next home run.” He is the one who said; “Never let the fear of striking out get in your way.”

I plan on playing this game for a while, rain delayed or other. I plan on going for that one last touchdown. I plan on going until I can go no longer, never giving up and never giving in. I plan on swinging the bat without fear of striking out, reaching for the next home run, keeping on and keeping on. A bit of rain is not going to slow me down. The dampness all round me need not reach into me. I just need an umbrella.

Tuesday, 17 September 2013

Murder In The Name Of God

Last night I watched a movie about Henry IV of France, also called Henry of Navarre and on occasion, Henry Bourbon. He was the first Bourbon king of France, taking over from the house of Valois, in a time of bloody internecine religious war in France. Both the houses of Valois and Bourbon are part of the long line of the Capetian dynasty, started by Hugh Capet in around 987 AD. The Capetians have ruled over much of the world in their time and I think Henry IV was one of the most interesting of them.

You see, he was the first king of Europe, perhaps of all the world, to declare that the crown had no place in the religion business. It was he who first set into law the concept that people should be free to worship and think as they wanted, as their hearts guided them, and not as the state decreed. Of course since he did this in 1598 through the Edict of Nantes, the Catholic Church was none too happy with him. Unfortunately he had grown so powerful as King of France that the Catholich Church could not simply excommunicate him, especially since they had so recently suffered the loss of England under the leadership of Henry VIII and Elizabeth I. The Pope had to take other actions to get rid of Henry IV.

So instead, the Catholic Church simply tried to assassinate him. Henry IV suffered no less than 12 assassination attempts, the last and successful on taking place in 1610. There are some who would suggest that these attempts at outright murder of a reigning sovereign were done by passionate individuals, but it takes only the merest amount on investigation to uncover the hand of the papistry in them. Murder was ordained in the name of God.

I suspect God wanted nothing to do with these murders. These were murders of religion, not God. God was not behind this religious execution; the Catholic Church was behind it. This religion, in its ever straining attempts to maintain its power and hold back the hands of time sought the ultimate solution, drenching itself in the blood of free minds.

Not that the Protestant Church is any better; its history is also a pool of blood and conniving, all in attempts to maintain power and control over people. The same can be said of so many religions, that they manipulate and destroy all for the love of wealth and power.

I believe in God. This may be a dismaying statement to many of my friends who hold other beliefs. But rest assured, I have no faith in religion. It is an organized attempt to suppress the free minds of those who are either too lazy or lack sufficient intelligence to think for themselves. All we need to do is look around us, even unto this day, to see murder in the name of God. That is what religion can do.

Monday, 16 September 2013

Bone Scan

I am in the middle of the bone scan procedure this morning, having been to the hospital early for the radioactive injection. I now sit, waiting, in a Starbucks just down the highway from the South Health Campus here in Calgary, so that the tracer can work its way through my body and bind to my bones. The team at the Diagnostics Imaging Clinic is terrific, helpful and good humoured, making the first part of this process quick and painless. Of course all it entailed was an injection and some baseline scans. The big deal starts at 11:45 AM.

Of course I am no fool. I can do the math. Yet no matter how hard I try, I cannot help but hope that they will suddenly discover that the medical team missed something on my early scans, MRI's and X-Rays. The time from initial diagnosis to shoulder pain was months. If there was a relationship it would have been apparent long before this. The first signs, the early symptoms, started a year and a half or more before I was diagnosed, so there is no real hope here, let alone hope based on some strange injury that happened just a matter of weeks ago. All they are really doing is trying to figure out what this constant pain in my left shoulder might be.

Yet hope continues. No matter how hard I try to dismiss it, no matter how often I tell myself I am being silly, underneath, deep inside, below my ability to control it, hope arises. I know full well my hopes will be dashed on the rocks of this disease. All of them have been smashed, as test after test proves the diagnosis, as trial treatment after trial treatment fails, as research report after research reports shows almost no progress. Hope, blinded to reality, completely uncontrolled and wanton in its malfeasance screams out from the depths of my humanity. Hope continues.

Of course I am no fool. This is not denial, this is hope. I hope for slowed progression. I hope for longer life, more meaningful time. I hope for love, companionship, caring, compassion. I hope for dignity in my final time, for safety as my end approaches. I hope for so many things in the face of this hopeless situation. Bone scan or no, I continue to hope.

Sunday, 15 September 2013


I caught myself doing it again this morning, hoping. It is a part of the human condition that we fool ourselves into thinking that there are better things out there when reality is a very darker image. Without this ability to blithely ignore the facts in evidence, we as a species would self-extinct in a generation. Perhaps this need to paint our futures bright in a world of dull is what makes us human.

It's not like getting up is an enjoyable part of my day. It starts with a lengthy spell of trying not to; I spend a lot of time wondering why I should bother at all. But eventually my body demands it. I wonder what will happen when I no longer have to use the toilet, what will happen when I am tubed up? Will I be happy just to permanently lay abed? For now, get up I must, and on arising the first thing that greets me is the reflection of myself in the mirror. I look at my dead legs and fat belly, seeing with such dismay what I am now versus what I once was. I grab my change of clothes and head for the bathroom.

The hallway in my apartment is wide enough for me to get to the bathroom but not quite wide enough for me to make the turn. So to do this, I take off the front legs of my wheelchair and drag my dead feet into place as I inch my way forward. I've left a permanent gouge in the door frame with the front casters on my chair, a result of the narrow bathroom door and my inability to get that turn just right on a consistent basis. But gouge I must, and into the bathroom I go, inching my way forward as I adjust my legs and feet to stop them from dragging under the wheels or casters, to keep them from becoming just another obstruction.

That's when it happened this morning. I had just made that turn, just nudged my way into the bathroom. I was sitting there, looking at the toilet, mocking me in its porcelain purity, insulting me with its readiness to receive while I had to adjust and make the struggle from chair to seat. I took a breath and in that moment found myself thinking "I will never walk again". Then, without a moment's hesitation, in the instantaneous fraction of space that followed before I could move even those muscles that works, I found myself thinking "You don't know that. Anything is possible."

You can see the foolishness in hoping, or at least I can. And yet, hope is there, unyielding in its demand to rise from the soil of life. It is a spring blade in the open prairie, rising out of the crippling grip of death that is winter. It is the first flow of water from beneath the frozen stream. It is the sun, ever rising day after day. I cannot avoid hope, even though I see it for the faintness that it is. I hate it; I am still hoping.

Saturday, 14 September 2013


My daughter Kate has hit me with a card again. Actually she has given me a prompt card for every Wednesday and a prayer card for every Sunday. I open the cards, think about them, and then write, sometimes. The cards were a Christmas gift, one for each week until Christmas comes again. This year I will get through them all.

Her card for this week asked about what my parents had done that made me angry and what they had done that made me grateful. It's an interesting question, exploring how I feel about my parents. Yet beneath it is a challenging assumption, the assumption that you should be angry at your parents for what they have done, the assumption that I, of all people, am in a position to judge the quality of my parents actions.

You see, I find nothing in what my parents have done that makes me angry. I have lived long enough, seen enough in that life, and had my own children for enough time to realize that my parents, through good and bad, were and are as human as the rest of us. They did what they did because they did it, and it is not for me to judge it in any way. They, with all the failings and frailties of humanity, did their best and did what they thought was right. Through immense struggle and difficulty, they created a life where I could grow, learn and become who I am today.

I have no right to hold any anger; my parents owed me nothing once I was past childhood, and even in childhood owed me only the care, both physical and emotional, that would see me to adulthood. Everything else was a gift, a free donation. I as born, fed, clothed, loved and made free. Everything else in life pales when compared with that; nothing is worth anger when compared with that.

On the other hand, I am grateful for everything they did for me, for that which they did was done willingly, not through compulsion or law, not through requirement or demand, but simply because they knew what they had to do. Where they could give little, they gave as they could. Where they could give much, they gave as they could. This giving did not stop when I left home. This giving goes on to this day.

At a certain age you come to see this, that your parents are struggling through life just as much as you are, that they are making decisions by the seat of their pants, just the way you are. I have no right to anger. My parents owe me nothing; they have already given me everything they can and for that I am grateful. They gave me life. I owe them everything, yet can give them so little. Perhaps they should be angry with me.

Friday, 13 September 2013


So someone said it again to me yesterday, someone with legs that work, with arms that are strong, with all the breath and lungs they could want, someone without ALS. They said "you should focus on the things you can still do, not what you have lost". This irritates the hell out of me. It is so easy to be pompously upbeat when you face only the normal challenges of life.

Here I sit, trapped in my chair, my swollen feet near iridescent purple, blotched and mottled. Here I sit, trapped in my chair, unable to get my own breakfast because the cereal has been put in the top cupboard where it has always been, that selfsame cupboard now too high for me to reach without standing, and standing being a challenge to great for this morning. Here I sit, looking at the mess and dreck in my kitchen, watching my housekeeper do the simple tasks that I could do a mere matter of weeks in the past.

Focus on what I can do? Those things that healthy people take for granted frustrate me. Those things that healthy people just do without a moment of thought are beyond me. Those are all things lost to me now, beyond what I can do. It is not enough that they are things I cannot do. In the ultimate of cruelties they are things that I once did easily, so recently functioning and fulfilling as still to be contained within my muscle memory, except the muscles cannot move to what is remembered, to what once was.

If someone says to me one more time "I was sad about having no shoes until I saw a man with no feet", I may just explode in anger and frustration. To have no feet is tragic; to have feet that sit at the ends of your dead legs and defy movement is not only tragic but maddening. To see the apple on the tree, just inches out of reach, and know that you will never again reach it, this is loss that invades every thinking moment.

I don't feel better than other PALS in worse condition. That their loss today is greater than mine in no way diminishes my anger and distress. It is betrayal to their lives, their dignity and strength, for me to feel better because they feel worse; their struggles highlight mine. Their advance is a harbinger, a notification of my future.

 Don't walk a mile in my shoes; I cannot. Sit for an hour, or a week, or a month in my chair. Then talk to me about what I should focus on. Don't lecture me on focus. It's all too plain to me.

Thursday, 12 September 2013

Thigh Dimples

I have dimples in my thighs. It's a weird kind of thing that happens when I sit on a hard surface like a chair or the toilet. What is happening is that the muscles in my legs have shrunk to the point where they don't fill the skin sack of my upper legs. Whatever fat that was there is gone too, so the skin just kind of puckers when I sit down.

For a while I have been saying I have "chicken legs", a kind of wattle, a fleshy caruncle hanging where my thighs used to be. The whole area is just sloppy and slappy. When I sit, it offers no firmness, no lift, no cushion. It's all just loose skin surrounding an atrophied muscle set. The skin sack of my upper legs is not shrinking as fast as the muscle is wasting. Hence, dimple.

It's no surprise that when I talk to other PALS one of the predominant feelings is that, while they are not suicidal, they just wish this whole disease process was over. Each day they get to see another thing change and it never changes for the better. For those with really slow progression the changes are so subtle that they seem to have stopped. For those with rapid progression, the changes are so highly visible that they are frightening. For me, with a moderate progression, the changes are steady enough to be a brutality of expectation.

It's like a Chinese Water Torture, which isn't Chinese at all. In the ultimate in racism, this torture, where a drip of water is dropped on the forehead of the unfortunate, was actually invented by the Spanish during the Inquisition of the late 1400's. The drip, persistent and steady, was said to drive the victim insane as he waited for the next drip to pound into the soft skin of his forehead.

This is ALS; a steady constant. It's a Germanic goose-step of muscular destruction, precise in its timing, variable in pace for each situation, and grinding in its impact as it marches our body every forward to certain doom. To steal a quote from The Muppet Show theme song, oddly accurate in its observation used this way, "It's like a kind of torture, to have to watch this show."

Rather than the torture, rather than watching this show, rather than waiting for an inevitable, unkind, crippling end, I wish ALS would just do it's job and get it over with. I don't want to die slowly. I don't want to die at all but if I must, I would rather do it without all this nonsense. I don't want thigh dimples.

Wednesday, 11 September 2013

Becoming Spiderman

I am scheduled for a full body neuromuscular bone scan next Monday. This is a nuclear process where they inject a radioactive dye, also called a "tracer", into your arm and then wait until it circulates through your body and "binds" to the bones. In a normal bone scan, the tracer moves evenly through the body. In an abnormal bone scan the tracer accumulates in the damaged bone tissue and becomes highly visible on special camera designed to pick up the radiation from the tracer.

This is a lengthy procedure. First, you have to arrive early, a half hour ahead of your appointment. My appointment is at 9:00 AM, so that means 8:30 for me. That way they can prepare me for the injection. That preparation includes making sure I have emptied my bladder and bowels, as the dye likes to accumulate in the body's waste systems. Then they clean your arm, where they will inject the radioactive dye, and then they inject this stuff into you, at which point you become ever so slightly radioactive.

Once the dye is injected and the medical team is certain you are not going to have a negative reaction to the tracer, you simply go and wait for a few hours. During the wait they ask you to drink two or three glasses of water to wash out any of the tracer that does not collect in your bones. Then, once again, you have to go pee to empty your bladder so they can see through it to the pelvic bones, otherwise the tracer in your bladder would glow and obscure the view.

It's an interesting thing this radioactivity. They tell you the dose is so low that it is harmless. The only concern they really have is that some people have a reaction to the solution with the radioactive isotope in it; not the isotope itself but the overall solution. However one of the warnings that you get when doing this type of thing is to "flush the toilet right away and thoroughly wash your hands with soap and water" after going to the bathroom. It makes you wonder just how much radiation there is in the isotope.

All of this is being done in an effort to determine why my shoulder is hurting so much. I am pretty sure I know what they are going to find. I think they will find a stress fracture in my arm, right beneath the shoulder joint. I think it fractured with I fell while having my heart attack. That's my guess. So off I go on Monday to get radioactive. Too bad it's not a radioactive spider doing the injection. At least then I might become Spiderman.

Tuesday, 10 September 2013

Who Am I?

What kind of person am I? Who am I? For some it may seem hard to believe, but I am fairly introspective. These days it becomes more than just something I do every once in a while. As my life progresses towards its inevitable end, I think more and more about the kind of life I've had and the kind of man I am. There are a few things about me that really set the stage for my life, only a very few things that are my true identity.

If you had asked me, five years ago, "who are you", I would have responded with "a husband and a father". If you had asked me, five years ago, what I liked to do, I would have said "I divide my life into three seasons, sailing, hunting, and work". The summer was for sailing, the fall was for hunting and fishing, while winter and spring were for work. Somehow my life made sense; it worked. As a family we spent summers exploring on the boat. Hunting trips were with my Dad, my daughter, my cousins, my in-laws. Work was simply the way I paid the bills; it was the least important thing on my list of things to do.

For much of my life I tried to keep a work/life balance where I did not identify myself by the work that I did, but more by the life that I lead. My role as a father was central to that life. I loved having my children around, having an active and lively home, filled with kids and conversation, laughter and life. I lived for my children and my marriage. This feeling is strong in me still, so strong in fact that one of my friends recently said "I think you are more broken up about the loss of your marriage than you are about dying from ALS". I had to agree; this is true.

In the last two years I have had to let go of all that I felt identified me. I am still a father but my children are scattered. Ricky lives with me, filled with the resentment and anger of a young man. Mary, Meaghan and Kate all live far away. My only contact is online although Kate makes sure to call me every week. Still, my days as a Dad appear to be over and it doesn't look like I will get to be much of a Grandpa. I can no longer spend time on my boat; ALS has taken that from me. Fishing and hunting are near impossibilities. I have even lost my work.

I am no longer a husband, and that feels more like a complete loss of family than anything else. The heart and soul of a family is the two people at the core of it. The loss of that core, of that foundation, has left me bereft. To have been so pushed out as to be irrelevant in the home, to have been so ignored as to be pointless, this was the most damaging loss of all. I liked being married. I loved having a family. Now I feel so much like I am alone, without identity, simply leaving, stripped of all that was me.

Monday, 9 September 2013

I Broke My Chair

I broke my chair, my Ikea Phoang chair! I love this chair. It is so comfortable to sit in that I continue to accept the struggles of getting in and out just so I can enjoy the "in" time. It's a deeply curled bentwood kind of frame with a leather cushion, all in black. It has become the centerpiece of my living room life, with both the TV and the sound system aimed and tuned to maximum effect for that chair.

For those of you who have seen me struggle with getting in and out of it, you may think this is a good thing. For those of you who have seen my stomach lately, you may think of this as payback. But for those who know me and understand how important having a "normal" chair is to me, you will almost certainly urge me to replace it.

It was the bolt in the left arm that broke, snapped cleanly off where it entered the wood of the side frame. It's an incredibly precise and clean break, as if someone had gone through it with a fine toothed saw, neatly snipping it off exactly where the bolt melded with the wood rail. I was simply sitting in it and it let go. Down I went, still firmly resting in the seat portion as it slumped to the ground.

Fortunately Ricky was here to come help me out. He held the chair in position while I transferred to my wheelchair. Ricky thinks it is the way I use the chair, the transferring in and out that puts extra strain on that bolt. He wants me to give up on it; he is very ready to encourage me to give up on things, as if I should just go down without a fight. After all, I am going to lose this one eventually so perhaps I should accept it now.

I refuse to take that approach. The chair is engineered to last for 20 years, not 20 months. On close examination, it looks to me like the bolt was weak. It may be true that I put extra strain on the chair when I get in and out of it, but surely that would not cause a steel bolt to snap right off. The other alternative is that the bolt was loose, just loose enough for there to be a shear point, a pressure point where there was just enough lateral motion to allow for the bolt to bend. Yet it does not look like it bent. It is a straight, clean break.

I am going to Ikea today. I am taking the chair with me. I am going to ask them what they think about it. Who knows? They may replace it. If not, then I am destined to purchase another chair. At least I don't have to buy another cushion. That survived.

Sunday, 8 September 2013

Going To The Symphony

I am in a hurry today, a bit of a rush. I slept in, something I am going to try more often. Then, after I finally got up, I decided to have a shower and get dressed up nicely.  I even shaved! You see, I am going to an outdoor symphony today, a concert in the park with friends. We are having a picnic, with accompaniment. So instead of my normal blue jeans and polo shirt, I put on dress slacks, a dress shirt, and a dress jacket. I look like I am going to work again!

Something good has come of all this extra dressing effort, an effort that included shoes instead of sneakers, a task that actually had me breaking out in a sweat. I discovered that I am not losing weight in my arms, shoulders or belly. Any weight loss over the last few months has confined itself to my legs, and in particular to the thigh muscles in my legs. While the disease progresses, I am not getting skinny yet.

How did I discover this? It would appear that the clothes in my closet are still snug on me. It's either that or they have shrunk in the last six months. You see, it has been almost six months since I last went to work, almost six months since I last put on these clothes. In those six months, the only thing that has gotten looser is the area around my thighs. Everything else fits as it did six months back.

This is a good thing. While ALS is taking me, it is not taking me in a hurry. While my FRS score is falling, I am still capable, able to live an active life. While my loss of diaphragm and loss of legs bothers me, I can still drive, still get out, and still do things like having a picnic while listening to the symphony in an outdoor venue. Plus I get to be with friends at the same time. I am once again reminded that I am not dying from ALS, I am simply living with it as long as I can.

Saturday, 7 September 2013

Moving Furniture

It's one of those days, one of those dreary, damp grey days here in Calgary. It's raining, sort of, and has been for overnight. The sky is a sheet of low of low cloud and I can hear the squish of water under the tires of the cars and trucks passing by on the street outside my window. My patio rail drips as does the fir tree. It's just plain dull.

I feel that way too, a reflection of the weather perhaps. My shoulder continues to give me grief and my feet are swollen. I want to have a shower but the effort of getting into the bathroom, disrobing, transferring, cleaning, drying, re-dressing and exiting seems far too much for so little reward. I just don't feel like the fight. I am comfortably seated in my Ikea Phoang chair and I really see very little value in moving about. Perhaps later, when I need the bathroom for other reasons.

This morning I finally came to grips with the need to move my dresser. It sits opposite the end of my bed with a passage too narrow for my wheelchair. Either the bed has to move, the dresser has to move; one or the other must give way if I am to access both, or I live perpetually out of a laundry hamper. Up until the beginning of the summer I would sit on my bed and reach out to the dresser. I can no longer reach without the risk of falling off the bed. So now I must change things around to make it work.

Moving furniture is something of an issue when attempted from a wheelchair. I am sure someone with a higher degree of strength and energy could do it. I think I can but would rather not attempt it on my own. I will have to ask for help, something I am loathe to do. I hate asking for help.

My life has taught me that asking for help is a bad thing to do. It puts you at risk; it puts someone else in charge, in power. The person you ask might say "no", then where are you? Not only have you suffered the humiliation of rejection but you still have the original problem. Better to do it yourself and not risk the emotional damage. Better not to have someone else with power over the outcome of your life. Inevitably it turns out badly, at least it has for me.

So here I sit, looking at the rain, wondering how I will arrange my furniture and move it. You see, in the end I know that it is me on the hook. I am the only one riding this pony.

Friday, 6 September 2013

Wheelchair Warrior

I did not mean to become a wheelchair warrior; it's an outcome of ALS. I did not mean to become an accessibility advocate; it is an outcome of ALS. I did not mean to become a champion, a motivator, a light in peoples darkenss; that too is an outcome of ALS. All I wanted to do was share my story, more as therapy for me than for anything else. All I wanted was a way to bitch and complain and cry and laugh, where others might read my story and share that with me.

The CBC in Thunder Bay just interviewed me for their Superior Morning Show. Lisa Laco, the host, did a taped interview with me; she was very gracious and kind. We talked about life in the chair and travel challenges. I am not sure if they will use it or not but it was very interesting to be a part of the process. I love the media; let's face it, I am an attention whore. I love the attention and before I die I hope to have my 15 minutes of fame in a bunch of two minute segments. As a bit player on the stage of life, I want the spotlight knowing full well I won't have it for long.

There is something important in all of this, something more important than my small part. It is the whole issue of ALS awareness. This has, for a very long time, been an almost hidden disease. The great example of this is Stephen Hawking. Most people have heard of him. Most people know he is in a wheelchair and talks through that computer of his. What most people don't know is that he has ALS.

This may trigger lots of questions, mostly around the fatality of this illness. People might wonder why he is still alive while others have died. That is part of the mystery of ALS. We don't know. Sometimes it moves quickly, other times slowly. Sometimes it takes a life in a matter of months, other time it takes years. What really counts is that people start wondering about ALS.

Then there are the unknown yet well known PALS, folks like David Niven and Chairman Mao. There is Kate Middleton, the woman who one day will be the Queen of England, whose grandfather died from ALS. And then there is me, a true unknown, struggling as I do to live until I die. Along the way I plan on telling as many people as possible about life with ALS, life in constant decline, life with humour, joy, pain and pleasure. I will not go quietly into that good night.

Thursday, 5 September 2013

Homeward Bound

I am headed home today, from Regina to Calgary. This summer I have traveled from coast to coast across Canada, staying in our borders the whole way, a distance of some 15,000 kilometers. I had my truck serviced in Vancouver before I left, then in Charlottetown, and now it is past due for service again, something that will have to be done in Calgary next week. I've visited every province as well as Labrador. Oh, and for a side trip I also went to Yellowknife. So, to steal a line from a song, I've been everywhere.

Yesterday was definitely a road day, covering three provinces, two time zones and one amazing prairie sunset, filled with hues of red and gold and magenta and vermilion, bathing clouds and land alike in richness of colour followed by dusky mystery. I drove from Thunder Bay right through to Regina, leaving there at around 9:00 AM Eastern time and arriving here at around 9:00 PM Mountain Time. That's 14 hours on the road, covering 1,300 kilometers for an average speed of 93 KPH, roughly 55 MPH. That includes stopping for Timmies, gas and Subway!

I felt good yesterday, starting my day early and getting underway early. It was the best I have felt in a while. The road called to me. It was the magnet and I the iron bolt, drawn ever westward, every passing kilometer the pull taking me homeward. I get like this at the end of a road trip, willing to make the long push as the call of my own bed, my own chair, my own place rises to encourage me onward. I am looking forward to getting home.

I am still not sure what or where home will be this fall. I love my apartment, rented though it is. I love the location and the access to the mall across the street. My neighbours are good and the apartment is roomy, at least for me. Yet moving is most likely in my future. My apartment is not all that wheelchair friendly and I will soon need more than standard kitchen and bathroom access; I already do. It is unfortunate, as I would just as soon stay where I am.

I have looked at some of the wheelchair apartments in Calgary. They exist. They are almost all smaller places than mine, built in the more recent days where square footage is at a premium. You might wonder why space like that is important to a single person like me, but it is. I've spent a lot of years in a house with real rooms; a tiny box-like apartment does not hold a lot of appeal for me.

Still, it's not where you live; it's how you live. I plan on living well no matter where I am forced, by health or finances, to be. I will do well simply because I know how to live well. You live well by loving life, by having good friends and family nearby. You live well by doing what fulfills and enjoying what you can. I can do this.

Wednesday, 4 September 2013

Going Pee

Be forewarned. This blog entry deals with the subject as noted. If you are uncomfortable with this basic biological process or graphic descriptions of the human anatomy, this may not be the post that you want to read. On the other hand, if a good effort at emiction just makes your day, then read on!

When I was about 8 or 10 years old, I read one of those more than witty little ditties written on a bathroom wall. This bit of grafittic doggerel stuck with me over the years. It went "No matter how much you shake and you dance, the last 10 drops always go down your pants". I as small boy whose valves, flaps and muscles all worked supremely well, if not my aim, I didn't see the point. I just remembered the rhyme.

As I got older and valves began to lose that ability to slap firmly closed, I began to see what the poet intended. It may not be 10 drops but over the years stragglers have been the bain of many a man at the urinal, including me. Still, a bit of tissue and all was resolved. Then I got ALS.

You might wonder how ALS affects my ability to go pee. Well, it does, in more ways that you might consider until you get to this place. First of all, there is the whole "standing up" issue. Men's anatomies are designed for vertical targeting and delivery. They are meant to take full advantage of gravity when engaged in voiding. It's just the way of maximal expulsion. Then there is the loss of muscle strength in my stomach, leaving me largely dependent on that gravitational pull for completion of said process; the muscles are still partially functional, so some eviction enforcement remains possible.

Think of the male process. You unzip, extract, aim, release, repack, and zip up. It all just works. It also means that other components are out of the way, extant from the process, swinging free from potential contamination or remaining packed and protected from potential splashback. Now think about how that process might be impacted while seated where all the right stuff is shoved together and nothing swings freely.

So I sit to go pee, with a body designed for standing. So what? If all else worked well, that is about right. Unfortunately when I sit, I don't sit like most people. What many of you don't realize is that when you sit on the commode, your legs are still actively involved in the ablutions. Those muscles are helping with position, lift and spread as needed. Mine do none of that. Furthermore, the seated position for the male components of the process mean additional twists and bends along the exit canal, thus slowing and even stopping the process sometimes.

I can make the effort seated from my wheelchair; consider how that might work. At least it saves a transfer from wheelchair to toilet, the arduous task for removing pants and underwear, and then reversing it all when complete, or quasi-complete as is usually the case. But it means the whole "unpack, aim, release, repack" process is more complicated and more likely to evince some level of moistened failure. For you men out there, you can test this approach by taking a low chair into the bathroom and seeing how it all works out.

Finally there are my stomach muscles, those weakening walls that can no longer guarantee completion of the required actions; I lack pressure when I need it the most. So I go from being a sharpshooter to a leaky valved faucet. Along the way, other bits and pieces get in the way. So all in all, it becomes a messy business.

This whole mess is just another of the humiliations heaped on me by ALS, another ancillary benefit of this disease, another 10 drops. All I can say is, "What next?"

Tuesday, 3 September 2013

Health Update

It's been a while since I've shared any concrete information on my condition these days. I have hinted at some things and shared others in a disparate fashion. Now I think it's time to provide a simple, direct update. There has been a lot going on with my body, and my emotions, over the last couple of months, the time that I have either been on the boat having a heart attack or on the road having an adventure.

Starting with ground zero, my legs, they are pretty much useless. I have no muscular strength left in them at all, with the oddest little exception, my right foot. While it is certainly not strong by any possible measure, I can still wiggle and curl the toes on my right foot and I can still lift my right heel. My left foot, on the other hand, so to speak, is completely unable to do any of this.

You might wonder how this impacts my driving. With the hand controls there is very little impact on my freedom to drive. The loss of legs does mean I have to be careful about where I put my feet when I get in the truck. The inability to stand also means a change in the way I get in and out of the truck. Even with the lift seat as an aide, standing is a dangerous affair, so I avoid it if at all possible.

Moving upwards, as this disease seems to be doing, I am losing strength in my diaphragm along with my stomach and chest wall muscles. This causes two issues for me, one cosmetic and the other serious. The cosmetic issue is that my stomach muscles are not strong enough to hold in my belly; it protrudes more than ever, giving me a distinct "ALS Belly" or as I prefer to call it, my Buddha Belly. This is not helped by the fact that my weight loss is taking place pretty much everywhere on my body but my waist. I am losing muscle mass, not belly fat. I hate this new reality, this big bellied look.

The more serious issue with loss of diaphragm and chest wall strength is the impact it is having on my breathing ability and speech. I seem to have a constant phlegm problem; I am constantly clearing my throat or coughing. I feel like I have a low grade pneumonia, suffering from a nagging, persistent yet unproductive cough. The most awkward part is when I laugh; I go into a coughing fit and still produce nothing worthy of note. The moisture just collects in my lungs and I do my best to keep it moving. I use a Lung Volume Recruitment system to maintain as much range of motion in these muscles as possible, but it is, as are all things with this disease, a losing battle. My lung capacity has fallen to below 80%; it is now below the normal range and into the unhealthy range.

The speech part is just evidencing itself these days. I get tired at the end of each and every sentence. My voice tends to become hoarser and more "breathy", and not in a good way. I don't sound sexier: I just sound tired. It's hard to tell in a lot of cases as I hide it well. I am now careful not to talk in long sentences. In some ways that may be a good thing; it makes me a better listener.

There are other things too, like the challenges swallowing and the need to really focus when eating. Those are not new, just annoying. Rather than dwell on them, let's just say that things are moving along as expected, neither quickly nor slowly, just along.

Monday, 2 September 2013

September In Ottawa

It is September; autumn is nearly upon us. Meteorologists say that our summer here in Canada is, in actuality, earlier to start and earlier to finish than the solstice and equinox would suggest, starting in early June and ending in early September. Certainly the crisp mornings with a hint of frost potential, the first of the golden leaves on the trees and the cool of even the sunniest days suggests that the season of short pants and long days is winding down.

We are moving towards the time of year when young men will stare longingly at young women in overcoats, imaging the summer skirt beneath; where women will wonder what that self-same young man looks like in the crisp shirt that surely must be beneath that puffy jacket. We are moving to the days when coffee is taken indoors rather than out on the patio[ indoors where the air conditioner is now a heater and the condensation forms on the windows, providing a moist screen of grey to hide the chill on the sidewalk, and where the conversation turns from hopes for a nice day at the beach to hopes for a good day on the snowmobile or at the ski slopes. We are moving to the days when people on the streets scurry from warmth to warmth instead of strolling leisurely in the glow of the sun.

There is still humidity in the air and the temperatures will still, on a day here and there, exceed 20 degrees Celsius. It is the softening of the light through the easy green of the untinged trees just whispering at the hint of change, the later start to the mornings and the noticeably early start to the evenings that tells the true tale, provides the real story of the finish of this season. As I sit here, looking out the window from the studio where I am staying at a friend's place here in Ottawa, I see the trees down the roadway with their variegated hews of green, yet each of them, save for the evergreens always present in this country, has just the edge of gold, just the slightest feel of yellow and red. Each day now that colour of fall will become more obvious, more visible for all to see.

We take joy in the passage of the seasons, in the inevitable rhythm and flow of life. Well, most of us do. Some of us see these changes and refocus them from their image of natural, cyclical progression into a story of our own existence. Those of us who know the signs of our passing summer note this same change all round us, see this subtle shift from life to death as a mirror, showing us a reflection of what we must all face. For some of us, the change of season reminds us.

Still in all, there is life here; there is, even in the coldest heart of the shortest day, life to be found. Still in all, there is no real death in this Gaia of our existence; it is simply a transition from one place to another, from one type of existence to another. The matter, the atoms of our corporeal selves, will change into something else. It may be that we simply die, yet even in death we become something else. Life is persistent. Autumn will turn to winter, winter will turn to spring. If I am here or not, this will happen. Then, some day, perhaps this will not even happen. Yet still, in some form, in some way, in some atomic structure, as the seasons change, I will be there too.

Sunday, 1 September 2013

Visiting With PALS

I like meeting other PALS, People with ALS. In almost all cases I find them upbeat and positive people, with a strong sense of humour and acceptance of where they are in their life and what is happening to their bodies. We usually compare notes and I learn a lot about ALS and how they are managing, how they are coping with their changes and losses. It helps a lot for me to see what others are going through and how they are responding.

Yesterday I spent the evening with a young woman and her family. She has had ALS for a couple of years, perhaps a bit longer. Her children at just 2 and 4 years old; lively, active and outgoing. It is a household filled with the laughter and excitement of small children. They don't realize what is happening to Mommy. Mommy is just Mommy, and this is how it is. They run to her with treasures, climb up on her lap with tears, play games and tell stories. In other words, life for them is life as it is for all of us.

Her husband is a generous and kind man with a ready smile, dealing with having two small children and a wife, all needing his care and attention. He has an air of calm courage about him; he has a strength that comes from within, a strength that keeps him going. He is quiet with a kind of assurance that says he knows people will listen to him when he decides to say something. When I asked what he really wanted to do, his answer was simple. "I want to make sure my wife and children are okay." That is a good man.

Her family came over for the evening too, her Mom and Dad along with her youngest sister, towing her boyfriend along for the ride. It was an evening filled with stories, laughter, conversation and caring. It was the kind of family scene that I can only wish for, that I would love to have again in my own home; the kind of evening that comes from being surrounded by those you love in a place of safety and protection. The only notable difference was that my friend was in her power wheelchair and I was in my manual wheelchair. It was a normal, regular, family having a terrific evening together.

ALS is an awful disease, if you can even call it a disease. It is an awful illness, where you don't feel ill until the very end and sometimes not even then, where your body dies and your mind lives, where pain comes eventually as a side effect but not as a part of the condition. It is strange to feel so normal, knowing all the while you are dying. Yet if you must die, being surrounded by loving family, happy children and a caring husband seems a good way to do it; living in the moment, loving those around you, laughing and sharing joy, these are the things that count.